If I count how many times someone has offered me a book about autism or a mom’s “journey” to cure her child’s autism, I can count how many times I’ve wanted to punch someone in the face. There, I said it. Many have even read the book in advance in an attempt to relate to my situation. Very kind, yet still worthy of a black eye in my book. Thankfully, in spite of my immaturity, I have great people in my life who want to help me any way they can. And the amount of titles I’ve been gifted over the years pretty much proves that I need all the help I can get.
Pride is an awful trait to inherit (thanks dad!), and I can now admit that I never wanted to be told how to parent J.R. Or “treat” his autism. I didn’t want to learn from, or in my eyes be shamed by, another mom’s published “success” with her kid. God forbid I read up on others’ misadventures in autism, for maybe I would have gleaned a bit of wisdom! The way things were going for me, the only thing I would have been able to put to print was What To Expect When You Aren’t Expecting Autism, One Mother’s Tale of Hatred Toward Autism Related Titles. Thankfully, I am evolving.
In an effort to keep from going to hell (and mostly out of peer pressure), I reluctantly picked up The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida. And wouldn’t you know, it instantly changed me. Yes, instantly. The Reason I Jump is a non-verbal autistic teen’s rare account of what it’s like to be, well, like him. Let’s go over that again: the boy does not speak. He has learned to communicate through a “board,” which to a layperson looks like a Ouija board. With the help of his mother and therapist, he graduated to typing. And boy oh boy does he have a voice now.
I was glued from page one. Its short Q&A style make The Reason I Jump a quick read, and Naoki’s replies cut to the chase. I skimmed ahead anticipating and wanting certain topics to be included. I was not disappointed. Get ready to for frank, mind blowing replies to questions such as Why do you do things you shouldn’t even when you’ve been told a million times not to? Do you find childish language easier to understand? The topics alone had me tearing up. It is as if his soft, gentle voice is speaking right to the you, the stunned reader. I want to hug this child so hard for the gift he has given me. Why? Because his eloquence relays myth buster after myth buster. More like myth napalm.
The theory to which I have always subscribed, at least when it comes to my son, is that autistic behaviors are driven by anxiety. I would have guessed around 99.9% of them. Repetitious behaviors, atypical obsessions, and “immature” interests, are products of a child’s need to feel comforted. Knowing what to expect in a world that is overwhelming and ever-changing calms kids like mine, right? Wrong. Intrigued? Buy the book. I will offer one gut-wrenching tidbit. Naoki schools the reader by revealing this: he has little control over his body and nobody feels worse about the burden he places upon his caregivers than he for not being able to have that control. Wow. And the words “having to apologize day in, day out totally drained me of hope” pretty much put me over the edge. Put that in your pipe and smoke it.
If you aren’t totally convinced, here are three reasons why Naoki’s “teachings” have left me (yes me) speechless:
- You may already know that J.R. is sporting a cast on his arm. On the few days my husband and I can coax J.R. into bathing, we put a plastic garbage bag around his cast to keep it from getting wet. It took many tries to get him to let us even come close to him with the bag, even when we knew he fully understood he couldn’t get (nor did he want) his cast wet. He screamed something unintelligible on the few attempts to “bag” his arm, until I finally realized he was saying “I am not garbage.” My gut reaction was to laugh, but after reading The Reasons, I knew he meant what he said literally. Heart. Officially. Broken. I was happy, however, to explain to him all the reasons why he was definitely not garbage. I held him tight, and said over and over “you are not garbage; you are beautiful” to which he replied “Thanks. You know I know I am different, right mommy?”
- J.R. is the most agile klutz I have ever met. It is a miracle he hasn’t broken every bone in his body. The boy can’t walk down the hall without severely stubbing a toe (daily), but at the same time he can fly down the street on his scooter, safely flirting within a millimeter of a parked car. The other day he ran into a wall, then lost it. “I HATE MY BODY!!!!!!!!!!!!!!!!!!!!!!” he screamed. I now understand that he often experiences zero control over his own body, and now we can talk about that too. You know, instead of me constantly telling him to slow down (or to pay attention, or to watch out….I could go on and on).
- Last night J.R. was scanning Netflix titles on the television. I assumed that no matter what struck his fancy, he would hit his go-to, Rotten Tomato award winning James and the Giant Peach. Watching the same crappy flick over and over calms him, right? Suddenly my thoughts went to The Reasons Why and I realized that J.R. may desperately crave variety.Why else would he even bother previewing other movies? Naoki submits that J.R.’s autism does not allow him to go “off grid,” no matter how much he wants to. There were no words exchanged this time. I just felt sad for him.
My point in all of this? Nobody is more aware of J.R.’s autism than he. Sadly, this is complete news to me. I see autism too, but I hadn’t seen seen him. And if he is anything like Naoki all he wants is my compassion, not reprimands or reminders. His frustrations come from not only his heightened awareness of his condition, but my loathing of it. He is who he is. I hope I experience more a-ha, speechless moments. I pray that my speechlessness sparks open, honest, loving conversations with my amazing son. And when it comes to what he has to say, I will be all ears.
For more information on The Reason Why I Jump, you’ll want to catch Jon Stewart’s interview with author/translator David Mitchell: http://thedailyshow.cc.com/guests/david-mitchell